scholarly journals Recognition of End-of-life Care by Nursing Care Staff, and Factors Impacting Their Recognition: An Exploratory Research Using Mixed Methods

2019 ◽  
Vol 14 (1) ◽  
pp. 43-52 ◽  
Author(s):  
Yoshiaki Kawakami ◽  
Jun Hamano ◽  
Midori Kotani ◽  
Miyoko Kuwata ◽  
Ryo Yamamoto ◽  
...  
Keyword(s):  
Mixed Methods ◽  
End Of Life ◽  
Nursing Care ◽  
End Of Life Care ◽  
Care Staff ◽  
Exploratory Research ◽  
Life Care

scholarly journals “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jessica A. L. Borbasi ◽  
Allison Tong ◽  
Alison Ritchie ◽  
Christopher J. Poulos ◽  
Josephine M. Clayton
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Aged Care ◽  
Care Staff ◽  
Care Homes ◽  
Residential Aged Care ◽  
Life Care ◽  
Advanced Dementia ◽  
Front Line ◽  
Care Managers

Abstract Background End of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia. Methods Focus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis. Results 20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding. Conclusion Aged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident’s terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.

scholarly journals Disturbing and distressing: a mixed methods study on the psychological impact of end of life care on junior doctors

2018 ◽  
Vol 188 (2) ◽  
pp. 633-639 ◽  
Author(s):  
Hannah Linane ◽  
Fergal Connolly ◽  
Lyle McVicker ◽  
Sharon Beatty ◽  
Orla Mongan ◽  
...  
Keyword(s):  
Mixed Methods ◽  
End Of Life ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Mixed Methods Study ◽  
Junior Doctors ◽  
Life Care

scholarly journals Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability

2018 ◽  
Vol 24 (6) ◽  
pp. 366-382 ◽  
Author(s):  
Ruth Northway ◽  
Stuart Todd ◽  
Katherine Hunt ◽  
Paula Hopes ◽  
Rachel Morgan ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
End Of Life ◽  
Nursing Care ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Nursing Support ◽  
Respiratory Problems ◽  
The Uk ◽  
The Impact

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

scholarly journals ‘. . . and then no more kisses!’ Exploring patients’ experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study

2019 ◽  
Vol 34 (2) ◽  
pp. 219-230 ◽  
Author(s):  
Maria Heckel ◽  
Alexander Sturm ◽  
Stephanie Stiel ◽  
Christoph Ostgathe ◽  
Franziska A Herbst ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
End Of Life ◽  
End Of Life Care ◽  
Multidrug Resistant ◽  
Life Care ◽  
Hygiene Measures ◽  
Patients Wishes

Background: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. Objectives: To integrate patients’ perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms’ diagnosis, protection and isolation measures on their well-being and patients’ wishes and needs regarding their care. Design: A mixed-methods convergent parallel design embedded quantitative data on the patients’ multidrug-resistant bacterial microorganisms’ trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. Setting/participants: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. Results: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms’ diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients’ quality of life. Patients’ wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. Conclusion: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms’ diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms’ policies of hospitals.

scholarly journals P142: Gaps in public preparedness to be a substitute decision maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study

CJEM ◽  
2019 ◽  
Vol 21 (S1) ◽  
pp. S115-S116
Author(s):  
M. Wong ◽  
M. Medor ◽  
K. Yelle Labre ◽  
M. Jiang ◽  
J. Frank ◽  
...  
Keyword(s):  
High School ◽  
Mixed Methods ◽  
Critical Illness ◽  
End Of Life ◽  
Decision Maker ◽  
End Of Life Care ◽  
High School Education ◽  
Life Care ◽  
Substitute Decision Maker

Introduction: When a patient is incapable of making medical decisions for themselves, choices are made according to the patient's previously expressed, wishes, values, and beliefs by a substitute decision maker (SDM). While interventions to engage patients in their own advance care planning exist, little is known about public readiness to act as a SDM on behalf of a loved one. This mixed-methods survey aimed to describe attitudes, enablers and barriers to preparedness to act as a SDM, and support for a population-level curriculum on the role of an SDM in end-of-life and resuscitative care. Methods: From November 2017 to June 2018, a mixed-methods street intercept survey was conducted in Ottawa, Canada. Descriptive statistics and logistic regression analysis were used to assess predictors of preparedness to be a SDM and understand support for a high school curriculum. Responses to open-ended questions were analyzed using inductive thematic analysis. Results: The 430 respondents were mostly female (56.5%) with an average age of 33.9. Although 73.0% of respondents felt prepared to be a SDM, 41.0% of those who reported preparedness never had a meaningful conversation with loved ones about their wishes in critical illness. The only predictors of SDM preparedness were the belief that one would be a future SDM (OR 2.36 95% CI 1.34-4.17), and age 50-64 compared to age 16-17 (OR 7.46 95% CI 1.25-44.51). Thematic enablers of preparedness included an understanding of a patient's wishes, the role of the SDM and strong familial relationships. Barriers included cultural norms, family conflict, and a need for time for high stakes decisions. Most respondents (71.9%) believed that 16 year olds should learn about SDMs. They noted age appropriateness, potential developmental and societal benefit, and improved decision making, while cautioning the need for a nuanced approach respectful of different maturity levels, cultures and individual experiences. Conclusion: This study reveals a concerning gap between perceived preparedness and actions taken in preparation to be an SDM for loved ones suffering critical illness. The results also highlight the potential role for high school education to address this gap. Future studies should further explore the themes identified to inform development of resources and curricula for improved health literacy in resuscitation and end-of-life care.

Using action learning sets to support change in end-of-life care

2017 ◽  
Vol 30 (2) ◽  
pp. 184-193 ◽  
Author(s):  
Karen Gillett ◽  
Liz Reed ◽  
Liz Bryan
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Action Learning ◽  
Care Staff ◽  
Life Care ◽  
Specialist Palliative Care ◽  
Content Type ◽  
Integral Component ◽  
Learning Sets

Purpose The purpose of this paper is to describe the delivery of facilitated action learning sets as an integral component of a multidisciplinary end-of-life care course. Design/methodology/approach The educational intervention described in this paper is delivered by specialist palliative care practitioners to those working with dying patients and their families in non-specialist settings. The programme consists of two components: the first taught/experience-based component takes place in a hospice. The second integral component involves action learning sets which are facilitated by specialist palliative care staff over a six-month period. This paper reports the challenges, learning and benefits of using action learning sets to improve end-of-life care. Findings Action learning sets provide support which enables staff to implement changes to end-of-life care. Participants in the successful action learning sets were motivated to change practice and identified themselves as change agents. Management support was vital to allow participants the authority to implement changes to practice. Practical implications Facilitators need to gain participant and management commitment to the action learning process before the programme begins if they are to be successful in achieving changes to end-of-life care. Originality/value Hospices and other health care organisations work in partnership to deliver this programme, and this paper demonstrates how action learning sets can increase mutual understanding and communication between specialist and non-specialist end-of-life care settings.

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